Inclusive education for children with autism in Pune

Inclusive Education

Inclusive education for children with autism and other developmental disabilities is now approaching reality in Pune. Nine children with autism appeared for the Maharashtra 10th standard (SSC) board exam. The accommodations and waivers granted to these students reflect an infusion of the fresh breath of inclusion into the corridors of the board of education .

Sarva Shiksha Abhiyan (SSA) in Maharashtra

The Education for All Movement, the central government’s flagship SSA, seeks to ensure that every child, including those with special needs, is provided an elementary education. As far as disability is concerned the SSA has adopted a zero rejection policy. It provides for universal access to infrastructure and curricula in schools. Maharashtra is at the forefront of this scheme. In all 380000 teachers from Maharashtra attended workshops on inclusive education through the SSA. 414277 children with special needs were identified and 380723 enrolled under the SSA in Maharashtra as of Jun-2009, . Of these about 9000 children were provided a home-based education.

Beyond elementary school it is up to the state education boards to ensure access to further education. For this the Central Board of Secondary Education (CBSE) initiated accommodations and waivers in 2009. This year for the first time, 9 students with autism from Pune division and 10 students from Mumbai appeared for the Maharashtra SSC 10th standard board exams. Lets look at why this is a significant social event.

Modern education of children with disability traces its history to Jean-Marc Itard a French physician. On the cusp of the 18th and 19th centuries Itard attempted to educate Victor, a feral child discovered in the forests of Aveyron. Although Itard himself judged his work with Victor a failure, this renowned experiment marked the first time that anyone considered the possibility that persons with disabilities could be educated.

Edouard Seguin (mid 1800s), a French educator, developed a method for teaching children with intellectual disability in order for them to take their rightful place in the societies of their day. The early training schools were based on these concepts. The schools were small and homelike with 8 to 10 residents. The original goal was the return of children to their families after a period of intervention.

Institutionalisation

Despite these early efforts, it was later concluded that educational and therapeutic approaches had failed. Persons with intellectual disability were scapegoated and regarded as the root cause of many social problems. Institutionalisation and segregation into special schools became the principal means of ‘protecting’ intellectually disabled persons from society and also for ‘safeguarding’ society against the social ill thought to be caused by an expanding population of defectives (Jackson 1999).

Mainstreaming

Lloyd Dunn (1968), a special educator, declared that most children with mental retardation could be "mainstreamed" in classes with typically developing age-mates. He questioned the need for segregated special education classes for most children with mental retardation. He highlighted the lack of evidence to show that children with mild mental retardation learn any better in special education classes than in regular classes. Lloyd Dunn pointed out that educational techniques had advanced sufficiently to allow the effective schooling of most children with retardation alongside other typical children.

Normalization

Wolf Wolfensberger (1972), a scholar, activist and prolific author in the field of development disabilities extended the idea of normalization to the service delivery system itself. He called on all residences, schools, and other services for persons with retardation to be as normative as possible. Parent and professional advocacy groups also fought hard for legislative and legal victories to decrease the size of large institutions.

Inclusion

Inclusive education seeks to overcome every barrier - physical and academic- to ensure the child is educated with their peers (Sigafoos 2003). It stresses the importance of peer interaction in the final outcome for the child who is to enter into the adult world on a level playing field. To this end academics is given a secondary role. The child is supported for all physical needs to enable participation in the classroom experience with their peer group. Academic difficulties are addressed by a remedial teacher or special educator attached to the class who helps the child in parallel with the regular curriculum. The child may be learning at a level many grades below the rest of the class but has the benefit of meaningful social interaction.

It has taken 200 years for the vision of Itard to reach the SSA, the national inclusive education program. The universal principles of justice, fraternity, and equality secured for all citizens by the constitution are driving us to ensure children with autism and other disabilities are educated alongside their peers. That is why nine children with autism have appeared for a board exam in Pune. That is why this is a significant social event.

References

1. CBSE. Amendments/Additions in Examination Bye Laws. 2009
2. Dunn L M. Special education for the mildly retarded—is much of it justifiable? Except. Child. 35:5-22, 1968.
3. Jackson, Mark. Mental Retardation In: A century of Psychiatry. Ed. Hugh Freeman. London: Harcourt Publishers, 1999.
4. Sigafoos, Jeff, Michael Arthur, and Mark O'Reilly. Challenging Behaviour and Developmental Disability. London: Whurr Publishers, 2003.
5. SSA, Inclusive education. Accessed 04-Jul-2011
6. SSA. Kolkotta National Workshop. Accessed 04-Jul-2011

Early Intervention in Autism - it works

Autism, in its broadest interpretation, has a prevalence of about 1:110 population. There is a severe shortage of early intervention facilities for persons with autism in India. World Disability Day is commemorated on 3rd December. Autism is not specifically included as a disability in the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. This may be contributing to the lack of funding for early intervention facilities.

Protodeclarative pointing - joint attention

 Disability in autism manifests during infancy in three domains

1. Social - Infants with autism show delays in smiling, gazing at their mothers and responding to their names and gesturing (e.g., pointing, waving bye-bye). This pattern continues, with the most impaired children growing to be avoidant or aloof from all social interaction.
2. Communication - Infants and toddlers with autism have delays in babbling, using single words, and forming sentences. Effective language acquisition and use remains a problem throughout life. 50% of people with autism never learn to speak.
3. Behavioural - Children with autism have difficulty tolerating any changes in routine leading to frequent tantrums. They display repetitive movements of the hands in front of the face, later giving rise to other peculiar and stereotyped movements and behaviours that stigmatise them as individuals.

These disabilities affect the ability of the person with autism to live independently and to carry out normal day-to-day activities of life

Various treatments clamour for the attention of parents of children with autism. These include HBOT (Hyperbaric oxygen therapy), chelation, animal therapies (dolphins, horses), various diets, and secret therapies. Despite celebrity and other endorsements there is no unbiased evidence that any of these therapies is effective, they are never curative. At best they are harmless and provide some diversion for the child and caregivers, at worst they can be life threatening.

Early intervention is effective in autism (Dawson et al 2010). The earlier the intervention the better. Effective early intervention programs can reduce disability to the extent that after two years nearly 30% of affected children no longer meet the diagnostic criteria for autism. There are numerous programs based on different philosophies and strategies, but most have some common components. Educational and behavioural techniques form the mainstay of these programs. Family involvement is essential. There is currently no evidence that any one program is better than the other.

Educational interventions

• Most programs involve 15 to 25 hours of intervention a week. They capitalize on natural tendency of children with autism to respond to visual structure, routines, schedules, and predictability.
• Good programs incorporate the child’s current interests and actively engage the child in a predictable environment with few distractions.
• They incorporate effective and systematic instructional approaches and use standard behavioural principles. The aim is generalization and maintenance of skills learned in therapy to life situations.

Behavioural interventions

• Challenging behaviours are managed with functional behavioural assessment and positive behavioural supports

Before starting on an Early Intervention program parents should check that the program

1. Is conducted by qualified professionals
2. Addresses deficit areas

• Inability to attend to relevant aspects of the environment, shift attention, and imitate the language and actions of others
• Difficulty in social interactions, including appropriate play with toys and others, and symbolic and imaginative play
• Difficulty with language comprehension and use, and functional communication.

3. Focuses on long-term outcomes

4. Considers individual developmental level and formulates goals.

I understand the anxiety of a parent confronted with a diagnosis of autism in their child. Unfortunately there are no quick-fix treatments or miraculous cures. Early intervention is time consuming and labour intensive, but in the long run it pays off.

Geraldine Dawson, Sally Rogers, Jeffrey Munson, Milani Smith, Jamie Winter, Jessica Greenson, Amy Donaldson, and Jennifer Varley. Randomized, Controlled Trial of an Intervention for Toddlers with Autism: The Early Start Denver Model. Pediatrics 2010; 125: e17-e23